Friday 27 February 2015

Ableism, Community Living and the Myth of Independence

Recently, I've seen a trend that worries me. Social media disability support groups are commonly hosting conversations in which independence is trumpeted as an aspiration.  That's OK, except that independence is simultaneously being presented as the most necessary ingredient to human worth.

The disability movement has always been fractured.  There are parents who seek safety and security in segregated settings, while others fervently defend their loved one's right to study and live in community mainstream settings.  There are parents of children with autism who seek a cure for the symptoms that cause suffering in their families and others who staunchly maintain it is society that must change and adapt to accommodate diversity, including disabilities such as autism. And of course, there are people with disabilities whose primary concern is employment and accessibility.  Seniors with care needs have a strong lobby. Jockeying for limited funding resources can pit the interests of various disability communities against each other, a situation in which there are no real winners.

For the most part, the choices we made for our son fell into the community inclusion camp.  But my husband and I have always truly based our choices for Nick on the best available arrangements matched up with what we thought our boy needed.  The one thing we always agreed on was that our solutions for adult living had to taken into consideration that Nick is medically complex and requires human assistance for every aspect of his life.  

I've noticed lately that public discussions within the disability community inclusion movement are not welcoming to people asking questions or seeking solutions that are not easily addressed by a model of support that is best suited to individuals with mild to moderate disabilities.  And it's not the lack of home support services that is the problem, but rather the individual's inability to learn skills that will make them more independent.  If a candidate for a housing project, for example, lacks the abilities to ensure success of that project, the person will not be welcome.  And that's not a bad thing in itself unless proponents of that project maintain that people who are not fit for purpose are selling out to a lower moral order. I am hearing people being blamed for their dependency needs.  On the other hand, if a person is perceived to have hidden talents that are valued by society generally (such as in the case of 'savants'), that person is welcome.  Where do the concerns of people with severe cognitive or complex physical care needs fit into this complicated hierarchy or worthiness? 

For many people with disabilities as well as frail elders, independence is a fiction.  For caregivers who love those who will always need the care of others, we seek to find solutions that maximize dignity, function and social opportunities.  But the first order of business will always be meeting the requirements of basic care for health and safety, life and limb.  

The discussion about how to accommodate a good life for our loved ones with care needs doesn't have to be fractious.  Communities that support the wellbeing of people with disabilities as well as our ageing citizenry must locate common agenda items and work together collaboratively to achieve broad, positive change.  The Stanford Social Innovation Review provoked lively discussion in 2011 with an article titled 'Collective Impact'.  In it, the authors propose that non-profits join forces on issues where they agree broad change must occur.  To achieve Collective Impact, organizations must engage in this process:

  1. Collaborating organizations must create a common agenda.
  2. These organizations must also share a measurement system that tracks indicators of success.
  3. Stakeholders must work together in mutually reinforcing activities.
  4. They must also engage in continuous communication.
  5. There must be a backbone support organization that coordinates, supports, and facilitates the collective process.

We must find a way forward in which all are welcome and dependency is not seen as either a weakness or a lack of imagination in problem-solving challenges.  We can do this by searching for consensus and drowning out divisive voices where the agenda does not reflect the greater and common good.  We can do this by insisting that our charitable non-profits engage in Collective Impact. 

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